Friday, February 27, 2009

The bad news: Robbie's hiatal hernia is back. The good news: Robbie's hiatal hernia is back.

This is bad because obviously it changes the surgery. Instead of being a 10 minute outpatient procedure with no stitches, it's a 90 minute inpatient procedure with lots more details.

The doctor said that because Robbie's stomach is attached to his abdomen from the gastrostomy (remember that yesterday this was a good thing) it will be more difficult to work around. He may have to actually detach it, do the hernia repair and then reattach it. He'll try to avoid that but the most important thing is to fix the hernia as well as possible.

He said that it's common for them to recur and particularly because Robbie was so small when they fixed it the first time (less than 4 lbs) there wasn't a lot of tissue to work with. Because he's much larger now, there is much more tissue and he has a far better chance of permanently repairing it.

All of this is good because it certainly explains why Robbie doesn't want to eat. It explains not just his discomfort but the fact that he eats a small amount and stops. What is likely happening is that he eats a bit which causes his stomach to distend upward into his esophogus, which hurts. And he's done. Who can blame the kid?

It's entirely possible that just like last time, he'll wake up from surgery and be starving. Of course, he's much older now and has learned the eating = pain, so he might not. The G tube will go in anyway just in case.

Just like last time, if he does return to eating and growing fantastically, it can always be removed again. (Though I'll probably be far more hesistant to do so right away this time.)

It also means he'll be under anesthesia longer, which of course means I'm more nervous. It's still not anticipated to be a problem, but they will try to get him awake as soon as they can. The surgeon said that if things go easily it may be as quick as an hour but if he has trouble working aroung the gastrostomy, it may even take longer. As he told me last time, "It's not a race. It takes as long as it takes to do it well."

We will be staying overnight. The doctor said that if it got to be about 10pm and we were fed up with the hospital and just couldn't take it a minute more, we could have the nurses call him and he'd discharge us, but he will need to be observed for a while after the surgery because his feedings will be held a while. We'll likely to go ahead and stay the night and go home the next morning. By now we're certainly used to the hospital life.

As always we could use prayers. Pray that the surgery goes smoothly and that the hernia repair is completely successful this time. And pray that this is truly the answer to our eating woes. For the first time in months I feel like we might really have hope that he might be able to eat normally.

Wednesday, February 25, 2009

The surgeon thinks it will be especially easy because he believes his stomach is still attached to the abdomen from having the G tube previously. He said he likely won't even need stitches and will be able to go home the same day.

He doesn't anticipate the lengthy recovery time of last time because Robbie's older and willingly breathes on his own now.

I told him I'd pack a bag just in case and he thought that was a good idea.

He sent us to radiology for a repeat upper GI to make sure his hiatal hernia hadn't recurred. If it has, that would obviously change things a bit, but hopefully it's just a 10 minute procedure with minimal pain.

I'm ready for it to just be done with now. I do feel a little more comfortable now that I've spoken with the surgeon. He comes very, very highly recommended and we had a really great experience with him last time. He even lead us all in prayer just before the surgery. But I won't truly relax until the surgery is over and Robbie is awake and well.

Monday, February 23, 2009

Robbie is just learning to blow raspberries. what he's really accomplishing is slobbering A LOT. I hope this video uploads bright enough that you can see him doing it.On the feeding front: Things haven't progressed well. They've actually regressed. We're back to him taking about an ounce and a half at a feeding. The rest goes in his NG tube.

Life with the NG is not so fun. He's constantly getting ahold of it and yanking. Even I managed to catch it a few days ago and almost rip it out. And putting it in it traumatic.

Our OT is concerned we're doing more harm than good with the NG because it's giving him so many negative feelings. He already cringes when you move towards his nose. Eventually it will get to his mouth, too. So this can't continue.

We had our follow up with the doctor today. We see the surgeon on Wednesday and will schedule the G tube placement from there.

Today's appointment was actually with both the nutritionist and the NP in the GI's office. They both feel that the G tube won't be super long term. Because he took so well to solid food, they think that once he reaches the point where most of his calories can come from solids versus milk, we will be able to get rid of the tube.

They said their plan is that as soon as the tube goes in, we're working on getting it out.

He weight 10 lb 13oz at the office today. I had actually fed him on the way to the doctor, so that was a little heavy. I weighed him on the home scale tonight and he was really 10lb 10.5 oz. That puts him up 11+ oz in 2 1/2 weeks. Considering he only gained 5 ounces in the month preceding that, it's obvious that things are going better. We just have to get the food INTO him.

For now, please pray that the surgery goes smoothly. I'm really nervous about it. He took 3 days to wake up from the last one.

There are many reasons this should go smoother.

-He's almost triple the weight he was then -the surgery is about 10 minutes versus the 2 1/2 hours previously-we know he reacts strongly to the anesthesia-he's having way less done so he'll require way less pain medication afterward.

Saturday, February 14, 2009

On Monday morning, our Dr. GI asked if I would reconsider going home and I finally agreed. That day I got a lesson on placing an NG tube and a bunch of medical equipment delivered.

We got home that night at 8.

Robbie, of course, pulled his NG tube out in the car, so I had to put a new one in as soon as we got home. I won't lie- it was awful.

They sent us with a different kind of tube than what I learned on and it was a lot harder than expected. I think I cried more than he did.

The week has gone okay. We seem to have a better day and then a not as great one. Overall, he's eating better, but still not up to where it should be. The doctor said on Monday that she hoped that maybe in 10 days he'd get up to better eating. That was 5 days ago. Let's hope the next 5 days show marked improvement.

Monday, February 9, 2009

Ironically, that is actually keeping us in the hospital. If he weren't making progress, they would send us home with an NG tube for 2 weeks and if things still didn't improve, they'd schedule surgery for a G tube.

Instead, they're trying to slowly increase his intake volumes to approach a normal level which might mean we get to go home without a tube.

I'm not sure I have full belief it'll happen. I think I'm beaten down my months of food wars, but I would LOVE to be wrong. Either way things have definitely improved.

Last night he took as much as 64cc by mouth (the goal currently being 75) and short of one bad feed today, he's taken 50-55 all day.

I think the plan right now is to leave him at 75 for another day, then try to up him to 90 and go from there.

If we can get him to 90, that leaves enough leeway that if he doesn't take that amount at every feeding, but at some, he can still consume enough calories to thrive.

We had a bit of a scare the other night where his heart rate was very low. He kept setting the alarms off. And it kept coming back "irregular heartbeat."

After a day or so of being dismissed, we finally had a great nurse who listened and could hear the irregularity and took it to the resident pediatrician. Her theory was actually that his NG tube was stimulating his Vagus nerve and causing the irregularity.

It made sense because it would get better if you positioned him a little differently, but I insisted on an EKG anyway. It was normal. *phew*

We've had a good run of nurses the last couple of days which makes for a MUCH more pleasant hospital stay. Our day nurse the last two days, in particular, was lovely. She was very attentive, knowledgable and seemed to love Robbie. What more could a mom ask for?

That being said, I'm truly sick of hospital life. Robbie eats every 3 hours but gets his vitals taken every 4. Of course, it always seems his vitals are due just as he gets to sleep.

Just now I'd finally gotten him settled only to have to get him back up to weigh him, and get all his numbers. I then got him back to sleep and now it's time for him to eat.

I also miss my bed and TiVo and Robbie's toys and swing. The hospital has provided some things and we have brought others for him, but it's not the same as being at home. We'll all be glad to get back home.

Thursday, February 5, 2009

The blood transfusion has perked him up a bit. He definitely has better color and more energy. He's used that energy to stay awake.

He was up until 2:30 am (amazing the nurses) and then only slept until about 9. Then refused to nap all morning.

He finally collapsed about 2 and took what was essentially a 3 hour nap.

Unfortunately he's not eating any better despite the meds.

Our pediatrician was in the morning for a "social visit" (as she called it) and I asked what the plan was.

Basically they want to give him a day or two of meds to see if there is any improvement.

They had him evaluated by OT today. Then from there we'll decide where to go.

The subject of the G tube came up again.

I have very mixed feelings about that. I know he needs nutrition but the thought of a hole in his side really is hard to be too excited about.

But Dr. P did make me feel a bit better. She gave a good pep talk about how much better it is for him and how much worse things could be.

They may want to do a scope to look at his innards before that as well. (Which would make me more comfortable as well. Let's rule everything else out before we go sticking a plug in him.)

OT came and pretty much said the same thing that our home OT has said. "He has great oral motor skills." Basically he doesn't have any negative oral issues and can eat- he just won't. Something happens where he starts eating, gets going great and then just boom! stops. No one knows why. Everyone assumes that SOMETHING is triggered, but no one knows what the something is.

For now we're really just hanging out and eating every three hours. For the most part he eats about an ounce and they put another ounce into his NG tube. Dr. GI did add a tiny bit of protein rich formula to his breast milk today. No one told me, but I assume that probably relates to the anemia.

Tomorrow OT wants to watch him eat again. He was quite sleepy when they were here today (it was the middle of his 3 hour nap) so they want to see if there are differences when he's awake.

From there, I guess we reevaluate.

Please keep us in your prayers. The best thing that could happen is he just suddenly starts eating.

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About Us

Robbie was born 14 weeks prematurely on 5/31/08. He weighed 1 pound 7 ounces an was 12 1/2 inches long.
He spent 96 days in the NICU, coming home on his expected due date September 4, 2008.
He's now three and amazing us every day!